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So Many Questions
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2 posts in this topic

I will try to keep this post from being very long but I also feel like everything stems off each other so that will be hard. I really need some help though please!

My 15 mos old was diagnosed several months ago as failure to thrive. We spent all summer doing many tests with a GI and did an endoscopy in July....GI was convinced she had Celiac. She is DQ8 positive but everything else including the endoscopy have come back negative. My DD was not gaining weight, has a very distended belly, and was pooping 4-7 times a day. After the endoscopy we decided to try a gluten free diet as the GI threw his hands up and didn't know what the problem was. He laughed at me when I suggested just trying a diet change (yes, we have fired him). He doesn't believe in just intolerances....it's either Celiac or nothing. She's been gluten and wheat free for 5 weeks now and at her 15 mos check up last week she had gained 2 pounds and grown 1 1/2 inches....huge growth for her! She also went from pooping 4-7 times a day to only 1-2 times. Ped was thrilled and said to keep her gluten free.

She had a seizure back in March (no answers why). She has had questionable seizure like behavior since (waiting on EEG results and is scheduled for a MRI). She was hospitalized 3 weeks ago because her blood sugars crashed to 43. Drs finally began to take me seriously after that. She was diagnosed with ketotic hypoglycemia. Endocrinologist doesn't know if it is caused because of an underlying issue of "Failure to Thrive" or something completely separately.

The last 2 weeks she has been giving me such a hard time eating ANYTHING. She used to have a huge appetite and would eat anything and everything (which also didn't make sense because she wasn't growing). I feel like removing gluten is definitely helping but I still feel like there's a problem. Here are my questions.....Is there such thing as just a gluten allergy/intolerance or does it mean she has Celiac? I have removed gluten/wheat but haven't gone strict with worrying about cross contamination or trace amounts in things.....can this be affecting her not wanting food at all? Her belly is still so distended...how long would this take to get better? Even things that used to be her favorites/treats she is fighting me on. I've heard that removing gluten can temporarily make people sensitive to dairy....could this be it? In the last week she has lost over a pound of the 2 pounds we worked so hard to gain :( Per the advice of the nutritionist we saw in the hospital she is also on Pediasure which I don't offer until I've spent a good deal of time trying to get her to eat solid foods.

I'm open to any suggestions or tips! We are in the process of getting a new GI now. I just don't know what to do. Obviously when she doesn't eat it also makes her blood sugars low which can't be happening.

TIA!

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There are a ton of issues which can cause failure to thrive in infants. I think you are doing an excellent job finding a new GI and working so hard to offer her solids before the Pediasure. There are some pretty strange allergies out there, aside from the eleven you hear about all the time, and its hard to diagnose allergies in infants (Corn, Oats, molds...etc.) . If you are waiting on test results for the EEG and an MRI my course of action would be the following; keep up the pediasure and offering solids, and pretend you are a nurse. Keep a chart/ notebook of her intake and her temperature three times a day. If blood sugar is an issue, start taking that as well. Sending you hugs and support.

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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